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 In this project, we have become enlightened since 1999 that “dementia is a brain disease” as we found after the survey that many people understand the disease as memory loss as the consequence of getting old, causing delay to see doctors on such ground.
Furthermore, we found, as the background, that a large number of rejections, in which people don’t want to think of their parents as having dementia, have caused prejudice and misunderstanding toward the disease. The Ministry of Health, Labour and Welfare decided in November 2004 to change the name of disease from “Chihosho” to “Ninchisho,” saying the Japanese word “Chihosho” includes derogatory meaning and deters people from receiving an early diagnosis, which is effective to cure the disease.
The survey revealed that only 24.5 percent of the participants saw a doctor although they have symptoms of dementia. Dementia is a disease with which patients are unable to cognize time and space, and 8 percent of the aged over 65 years old are said to develop the disease. If the patients are diagnosed early, it is, of course, worthwhile for cure, as well as giving patients an opportunity to express their views on what to do about their future care. An appropriate response to the patients enables both patient and caretakers to work toward gaining mental stability.
 The proposition is to reveal how dementia is regarded in Japan and to lead to the development of appropriate education and PR activities about dementia to create an environment where people are compelled to see doctor in the early stages of the disease. The point here is to offer many stakeholders value-added information that is both reliable and based on science (evidence). We also conducted educational activities targeting the general population, as well as activities to construct good cooperative ties with people in charge of medical and nursing care.
Analyzed video interview with a team of medical specialists and compiled the results in scientific papers This project was conducted by present data analysis in combination with a quantitative survey (questionnaire) and a qualitative research (interview). The results were disseminated by using the following three strategies;
The first is the survey research in collaboration with a medical team lead by Dr. Akira Honma, a leading authority of dementia diagnosis, of Tokyo Metropolitan Institute of Gerontology. The second is a videotaped interview, which was analyzed by sharing the current patient status, including the patients’ facial expressions with the medical team. And the third is to compile the findings obtained in the survey research into scientific papers prepared by the project staff “Why is early visitation difficult?” (The Japanese Society for Dementia Care), releasing them to the public including doctors and caretakers.
The survey disclosed that the surrounding human relationships and value judgments, which are not discussed in relation to dementia, are virtually a very important barrier factor.
| 1) |
Caretaker families were asked why they do not take patients to see doctors, and three fourths of the respondents replied, “everybody has the disease as he gets older,” resulting in insufficient recognition that “dementia is a disease.” |
| 2) |
Family environment contributes to the difficulty in noticing any changes of the aged, as the number of working wives and nuclear families are increasing, “As both of us are working and busy, resulting in the delay in noticing the change,” and “Living far from parents, we didn’t notice the change,” were often repeated remarks. |
| 3) |
Although the symptoms of dementia are already evident, one third of the families didn’t recognize dementia, and 67 percent of the patients were diagnosed as seriously afflicted. The reality is that the families “don’t want to admit dementia” or they don’t have any knowledge of the judgment standard for dementia. |
| 4) |
More than 20 percent of the people who consulted their personal physician said “it was not because of the disease but of age,” or “they couldn’t get appropriate advice,” revealing a lack of awareness by doctors. |
 We developed PR activities in the direction that takes away “various factors to deter the patients from seeing doctors,” which we may overlook. Especially we didn’t monopolize the survey results, we compiled them into scientific papers to share them with the general public by revealing and making a base to tackle and resolve the problem within the entire society.
The paper was treated by newspapers as “basic data” in the PR activities to enlighten the public’s awareness of dementia, and medical specialists discussed the paper in numerous lectures including international conferences. Furthermore, it lead to the designing of programs to improve the dementia diagnosis techniques of family physicians (expanded as a model project by the Ministry of Health, Labour and Welfare), as well as drawing up “Checklist for memory loss,” and to disseminating the pamphlet “Consulting doctors for memory loss” through local medical associations.
In the greying society, dementia is becoming an issue of increasing importance. It is essential not only to see ones doctor in the early stages but also to admit that everybody has the potential to be afflicted with dementia, thus, there is a need for the general public as well as caregivers and the medical community to understand dementia more accurately.
Therefore, one of our future tasks will be to shift the target from the “caretaker family” to the “dementia patients” themselves (including the younger generation of potential patients), and, along with medical examination and patient notification, we aim to convey the merit of early consultation with thoughts toward the available medical services and patient-centered care giving.
We are now conducting a questionnaire survey of “family physicians,” “care managers,” and the “general public,” and will utilize the results in our future PR activities.
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